Merry Christmas

So, it’s been a while. We fell off the wagon a bit since Kai was ill. He was ill so for long, and we’ve been laser focused on him. On making him comfortable, doing everything we can to help him recover all skills he’d lost.

It took *weeks* – weeks of gentle gentle everything. Gentle feeding, gentle stretches, gentle patterning, gentle encouragement. Eventually Kai came back to us, recovered some tone, regained his eating skills, started vocalising again.

And while all this happened I held my breath. I didn’t trust the upswing and was super tense waiting for the swift down to follow. I didn’t want to share how good he was, in case I invoked Murphy and his law (The Fear makes me more superstitious than I ever thought I could be). So haven’t shared, and I’m sorry for that. You all have been our biggest cheerleaders, so I’m sorry for depriving you guys all the good times we’ve had. Here’s a happy Kai:

And then there was the book. Oh my days, the BOOK. I’m overwhelmed with the amazing response we’ve had – we’ve sold over 200 books (!!!!) I don’t have all the languages out yet, but I’m working on it. Some of the translations aren’t perfect so I’m working on fixing those already in print before ploughing on with the other 20 languages waiting for me.

But you guys, it has been so heartwarming to see photos of Eva with your little ones. Honestly, it makes me SO HAPPY. And reading the reviews has been so nice – you guys are the best!

(Sidenote: if you bought a book and could leave a review on Amazon, that would be amazing!)

And then, we had a journalist from our local paper talk about Kai and NKH and Eva (here) which was amazing.

And before we knew it, it’s Christmas Eve. Time, it’s run away with us.

Kai is good right this minute. He’s vocal and wriggly and has all the opinions. We love him so so much.

Thank you, all of you, for love and support and kindness this year. Tomorrow marks the day we were admitted to intensive care, and in the following days we were told that we should say goodbye Kai, and move on to hospice.

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

Fundraise with us

Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.